Tag Archives: Eosinophilic

School’s out for summer!

I have that song by Alice Cooper bouncing around in my mind as I type. I wish I could have it playing in the background as you link to this blog post, but the best I can do is point you to this You Tube clip.

We’re in the final stretch of the school year and the end is tantalisingly close. G finishes school tomorrow and M has one last day on Monday. The promise of 6 weeks of summer (well I can but dream) to enjoy is wonderful. A time for us all to rest, recuperate, have some fun and hopefully see M return to better health for the start at his new school in September.

The last 2 weeks have been mixed.

Courtesy of telegraph.co.uk

Last weekend, Mike took the kids away on a “Dads and Kids” camping weekend, organised by other Dads in our church. The weather was amazing, they had a great weekend, got to build on some fantastic friendships and I got to have a weekend off! I wish I could say I spent the weekend doing nothing but relaxing and spoiling myself, but the reality is that I spent the weekend catching up on some long overdue household chores – ironing in this temperature is no mean feat – and trying to stay cool.

Courtesy of export-forum.com

Unfortunately, M’s hoarse throat on Friday afternoon turned into, well, I’m not 100% certain what it turned into, but it might have been croup or a heavy cold or a chest infection or any combination of the above. By Sunday evening, his temperature had shot up to over 39 °C and that started 3 days of a very poorly M. He had a sore throat, high temperature, complete loss of appetite, croup-like cough, no energy to do more than sit and watch TV and felt sick every time he took his new medicine.

The problem is for M that he just has no reserves to fall back on when he becomes ill. His body can’t cope with the illness and his EGID symptoms will typically flare too. He has, however, headed back to school today; the lure of the Year 2 leavers’ disco after school being too great for even my poorly boy to ignore. It is such a shame that he has missed 3 days off this week as he moves on from the school at the end of term and will miss his friends.

Courtesy of yola.com

Our plans for the summer holidays are simple. Mike and I will spend most of our weeks working, whilst G and M spend some time with my Mum. We are off to Portugal for a week once again and I’m already beginning to plan what foods I will need to take with us. The time I have at home will be spent playing in the garden, investigating our local area and trying out some new baking recipes that I’ve been given by friends. Most importantly, we will be trying to encourage M’s body to recover and hopefully see a return of his appetite. The hot weather at the moment isn’t helping, but I would love to see him eating as much as he was even a fortnight ago. We don’t have any return visits to GOSH planned until October, but I will be putting in another call to the gastro team this week to see if there’s anything else we should be doing or if they do want to see him ahead of the next appointment.

Most importantly, my plans include ice lollies…lots and lots of M-friendly ice lollies!

Courtesy of lovefood.com

Hyper-sensitive M

4 Replies

Now many of you might have looked at that title and wondered on the use of “hyper-sensitive” in reference to M. Over-sensitive may well have seemed reasonable and I’d agree, having seen the wild mood swings and tantrums that sometimes rock my youngest, but hyper-sensitive was a word that I chose deliberately.

You may remember from a blog back in April that I had been awakened by a distressed M in the early hours of the morning. What I didn’t share back then was that the reason behind his disturbed night was an unexpected allergic reaction to a mint. Yes, you read that correctly, the humble mint has caused a month of suffering for M and we are only now beginning to see a faint, flickering light at the end of that very dark tunnel.

I have to admit to feeling like a dreadful parent once I realised the cause behind the relapse. Perhaps the quick scan of the list of ingredients hadn’t been enough? Perhaps I had missed the warning that said it contained something that M was allergic to? Perhaps I need to insist that he doesn’t have a treat when with friends, but only ever eats what I’ve provided. Well, the last point might be valid, but in this case, I’ve discovered that actually there was nothing that I could have done differently and my guilt was unjustified.

The only reason I know that the mint was the culprit is thanks, yet again, to my mighty friend, Dr Google. The night after that very disturbed one, having seen the consequences of the unexpected relapse throughout the day, I examined in minute detail the food diary we keep for M to see what, if anything, was different about his diet. As part of the process of discovering exactly what M is allergic to, I keep a daily food record of every item of food that passes his lips as well as noting if he’s been feeling unwell, had a temperature or has had a soiling accident and so I knew that the answer to our puzzle was likely to be found in there.

The previous afternoon we had met up with a school friend of M and his family for a play and a catch-up away from the playground. Whilst there, M’s friend B asked if M was allowed to have a Mento mint. I scanned my eyes over the ingredients quickly and saw nothing to suggest that M couldn’t have one. I gave my permission and the boys ran off to share the packet between them and their big sisters. Using Google the following evening, I discovered to my dismay that the glucose syrup contained in Mento mints is derived from wheat, which is not stated anywhere on the packaging itself.

After the exclusion of gluten from his diet back in January, we had seen the disappearance of the last allergic reaction as M finally become fully toilet-trained for the first time in his 7 years. We celebrated 30 days of being accident-free with a trip to Build-a-Bear workshop and M became much happier and calmer in himself as he no longer needed to worry about whether he was going to get to the toilet on time or not. Now that had all disappeared. I couldn’t believe that something so seemingly simple was the cause of a great deal of heartache and frustration for the whole family as M went into relapse and we were back to square 1.

We had an appointment booked at GOSH for the beginning of May and I looked forward to the opportunity to discuss the problem with the team there. Their initial response was somewhat sceptical, I have to confess, as this product is considered safe by Coeliac UK, who are a respected advisory group to those suffering from wheat and gluten allergies. However, I knew that these were the only thing that could have caused M’s reaction and was adamant that this was the problem. Fortunately, my standpoint was further strengthened by the fact that we knew that M reacted to soya lecithin despite being assured that this is usually safe for soya-allergy sufferers. This we had sadly discovered was not true for M at Easter, when he had a mild reaction each time he ate any of his “everything but soya lecithin free” Easter egg.

The conclusion was simple. M suffers not only from multiple food allergies, but is considered to be hyper-sensitive to them. This means that whilst some ridiculously high percentage of wheat- and gluten-allergy sufferers will not react to by-products such as this glucose syrup derived from wheat, and likewise soya-allergy sufferers will not react to soya lecithin, M will do. He may grow out of these as he gets older, but he might not. He could develop further allergies, or he could not. There is no simple answer to the problem of having a hyper-sensitive, multiple food allergy suffering child. I can ensure that as much of the food I buy is as M-friendly as possible and I can attempt to restrict him to only those treats I’ve researched and deemed safe, but there will be times when we might just have to take the chance and I will have to support him and deal with the consequences.

The most difficult challenge for us now is taking M anywhere. The risk we have to consider is whether M will be okay with a food if we don’t know categorically what it contains and are certain it’s safe. That immediately restricts the restaurants we can take him to on the occasional day out and means that I am going to be paranoid and become “that Mum” who is over-anxious about what their child is being fed in anyone else’s home. The truth is I don’t mind being labelled as a fussy Mum, I’m sure I’ve been called much worse, if it ensures that we get M back to the road to recovery and keep him there for a few months at very least.

The importance of doing research

The final answer?

3 Replies

Having taken a week’s hiatus from the story of our journey to a diagnosis to blog about our week on M’s diet, I wanted to just go back a few months and finish the story of getting to where we are today.

In September 2012, we had now reached what appeared to be a status quo for M, which though still not ideal, was vastly improved from the position we’d been in less that 18 months earlier. He was taking 5 lots of different medicines during the day to cope with his symptoms – 2 anti-histamines, 1 calcium supplement, 1 probiotic and the protein shake – and was still dairy, egg, wheat and soya free in his diet.

We survived day trips, weekends away and even a two week holiday to Canada to visit Mike’s family and had come through them all relatively unscathed. M was growing taller by the day, though his weight continued to be a concern. We only suffered with a couple of bouts of croup and the household coughs and colds didn’t appear to have any ill-effect on him. There was the occasional, inadvertent slip-up with his food and we all suffered the consequences of those, but we quickly identified what had caused the problem and realised that, for the time being at very least, M would need to continue on his strict diet.

Christmas 2012 came and went as did G’s birthday and both occasions were celebrated with M-friendly food. 2012 had been a tough year for us all for very many reasons and it was good to finally see it leave and be able to look forward to a brighter 2013.

The beginning of January 2013 saw us returning to GOSH for an appointment with M’s consultant. This time round we were able to make it a family trip as the children had yet to return to school and so all 4 of us spent 2 days in the Capital. Mike and I were determined to get some answers this time round. We felt that whilst we had made huge progress with M, we still weren’t in a place that was ideal for any concerned. We didn’t know what we could expect, but we were desperate for a diagnosis and a clear plan in place for the foreseeable future.

The appointment started in usual fashion with a quick overview from our standpoint of how things were going since we had last been there. I had spoken to Dr Hill in the run up to Christmas and she was concerned by the continued frequency of M’s soiling accidents. I was able to report that little had changed since my conversation with her and so she suggested that we took the step of taking gluten out of M’s diet too. At this point, Mike lost it a little and expressed just how frustrated we all were with the lack of knowledge we had about what was wrong with M. We both felt that they were continuing to limit his safe foods without having a good reason for doing so.

She looked at us amazed and asked what exactly he meant. To cut a long story short, it turns out that there had, in fact, been a diagnosis in place since the previous April, but not one of the gastro team we had seen during the past 9 months had thought to advise us of it. I’m sure that many of you would imagine us to be fuming at this apparent incompetence, but, to be perfectly honest, both Mike and I were just extremely grateful that we now had a name to put to M’s condition.

The diagnosis was EGID – Eosinophilic Gastro-Intestinal Disease – a relatively rare and fairly recently identified family of gastric diseases, which fall into the bigger category of Inflammatory Bowel Disease. There is no need for me to bore you with the finer details (you can read a much better explanation here anyway), but it is an auto-immune condition that sees the eosinophils, which are a part of the white blood cells, attacking the body itself instead of the allergen.

For those among you with the better memories, this is indeed the exact condition I had tentatively self-diagnosed during 2012 (see here) and so, for me, this diagnosis was something I already knew a lot about and knew we could manage. I had sourced some fabulous support groups and had already joined them in the belief that this was the road we were destined to be travelling. We now felt empowered and able to take this diagnosis and run with it. The Dietetics team agreed to write a letter to M’s school explaining his condition and the impact it could have on him, which we hoped would enable some support and understanding that had previously been lacking.

We could also now educate both M and G about his condition. You could palpably sense the relief that M had simply by being able to put a name to his condition and he has a reasonable understanding of what’s going on in his body. It doesn’t make it any easier when you trying to explain to the 7 year old why he can’t eat a particular item, but he has grasped the reasons for the reactions his body is experiencing and is learning to accept the current limitations.

We also learned that we were in the best possible place to receive care for a child with EGID. GOSH is a leading light in the research world for understanding more about this family of diseases and is considered to most certainly be on par with the US in terms of their research. This was never going to be something M could outgrow, despite the reassurances of our local hospitals, but we could and would learn to live with it and to make the best of a difficult situation.

Life is a roller-coaster

1 Reply

Having put M’s scopes behind us, we headed into February and our next appointment at GOSH with lighter hearts. We had been reassured that Dr Hill had identified what the problem was during the surgery and that all we needed was the biopsy results to confirm the diagnosis.

Unfortunately, Mike and I were about to hit a “low” on our roller-coaster ride. The much anticipated diagnosis of Crohn’s Disease was not supported by M’s biopsy results and we left that appointment with no end in sight. There was talk of putting him onto the “Elemental diet”, which entails removing all foods for a number of months until the body has time to recover. The prospect of having to consider a nasal-gastric tube to feed M for any length of time was a tough one and one that Mike and I disagreed over. I felt that we needed to do whatever was necessary to get our boy onto the road to recovery, whereas Mike felt this was too extreme an approach and one that he wasn’t yet prepared to commit to. The registrar we saw suggested that M had some blood tests done to rule out some other possible contenders before we headed down this road and another appointment was set for a month later with M in tow once again.

Another month passed and the day before M’s birthday, we headed back to GOSH. This time Mike wasn’t able to take the day off work, so Mum accompanied M and me on our trek to the capital. We weren’t really sure about what we were trying to achieve and where we were heading. M had now been on his free-from diet for 9 months and whilst we had made progress, it wasn’t enough to satisfy us or the medical team. We were also concerned that M’s weight gain was minimal especially as his appetite had dropped off since starting his new diet and it was becoming a tough game to get him to eat.

We left GOSH with a raft of medicines to add to M’s daily diet. He was prescribed Cetirizine and Ketotifen, both anti-histamines that would help his body recover and repair from the allergic reactions he was still suffering from internally. We also needed to introduce a protein shake called Neocate Active to help him gain and maintain his weight. The biggest challenge was going to be to convince M to drink the protein shakes as they are notoriously difficult to introduce successfully to children and even our GP wished us luck as he wrote the prescription.

True to form, however, after an initially bumpy start and numerous attempts at flavouring the shake, M willingly drank his shake daily and even now, 12 months on, has been known to ask for more than one in a 24-hour stretch! The medicines proved to make a difference to how M was feeling and whilst there were no immediately obvious improvements, M seemed to understand that they would help him feel better and took them with very little fuss.

It was during this time that I became a big fan of Dr. Google. I wasn’t looking for all the answers to all my questions, including those I hadn’t yet thought to ask, but rather needed to find information about the experiences we were going through and to know that we weren’t on our own. It is important to stress that you do have to be sensible in your approach to using on-line search engines to identify a condition. It would have been very easy to diagnose any one of a number of frightening illnesses, so a modicum of common sense had to prevail.

However, in my desire to understand why both antihistamines had been prescribed and what result we were trying to achieve, I stumbled across a list of symptoms that fitted M to a T. The Fabed website sought to educate and support families coping with something called “Eosinophilic disorders”. I knew nothing about these conditions, having never even really heard about eosinophils and what they were, but the symptoms rang a bell and I determined to read around it until I became a home-grown expert in it. I discovered not only Fabed, but also another website called Parentsown, which is home to a series of forums for varying conditions. Whilst the forums are not massively active, I made contact with a couple of other parents who had children with Eosinophilic disorders and became more convinced that this was the diagnosis we were seeking with M, although the condition was going to haunt me for another 9 months before we got it confirmed as a definitive diagnosis.

When life gives you lemons…

2 Replies

…make lemonade. Isn’t that how the saying goes? I have to confess to pondering this one in the early hours of this morning after being woken up by a somewhat distraught M who had just had a soiling accident whilst asleep. He woke me at 3.45am and 2 hours later, my mind was still buzzing and sleep seemed a thing from the dim and distant past. This doesn’t happen very often, but the impact is huge and it got me to thinking.

The impact of M’s condition has been massive on us all as a family and not just on M himself. To anyone who has a “sick” child, you will understand what I mean.

Mike and I have suddenly had to become medical experts in our own rights, despite our alternate careers as an accountant and surveyor, as who else is going to make sure that the best is done for M? I now know so much more about gastro conditions and food allergies than I ever anticipated needing to know. I’ve had to learn coping mechanisms, not just for M to deal with his frustration and anger at being ill, but to help us cope as well. The years of not having an answer have taken their toll and both Mike and I have had to re-learn who our little boy is and what makes him tick. I have to be his first line of defense wherever we are and I’m the one in his corner fighting his cause.

One of the hardest things about this illness is that there are no obvious outward signs that M is ill. He is a slight child and even when seriously underweight and struggling with full toilet-training, he has never lacked energy or enthusiasm for life. He may suffer with stomach cramps and joint aches that would floor most adults, but he just gets on with it. His complaints of aching limbs have been ignored for years as I was guilty of thinking of him as a “moaning” child, but now I know that those aches are very real and extremely uncomfortable whilst they last. He has been living the last 7 years with these as his normal, so he only stops when he’s suffering extreme moments of pain. He had then, and continues to have, the most amazing stamina and a reserve of energy that I can only envy. He is constantly on the go and has never let his health problems slow him down. In very many ways, this is his greatest strength, but also the biggest problem for us.

The lack of obvious evidence of his poor health means that people just don’t understand that he is ill and look at me in disbelief when I explain just how poorly he can be and, to be perfectly honest, I don’t blame them at all. He doesn’t look like a child who eats fresh air and frequently manages on less than 8 hours sleep a night; but he is.

I don’t think that Mike will mind me sharing that he has struggled to come to terms with M’s condition. I have an advantage in that I have grown up living with my own T1 diabetes. I know that these things can be survived and have just got on with it. Mike has found it harder and has longed for an easier fix than the road we seem to be travelling down at the moment. Of course, we now have a diagnosis and that has helped us all. Being able to put a name to the condition, even though it’s so rare that no-one ever seems to have heard of it, means that our fight has not been in vain and we can no longer be dismissed as fussy parents. This is M’s life for now and for the foreseeable future, and as his parents, our job is to ensure that he learns how to make the best of a bad situation.

M has struggled too, as you would expect and his levels of frustration at times are massive. Not only is he restricted by what he can eat and how his body reacts, but he also has to deal with the knock-on consequences. It is no longer possible for him to go home for tea with his friends, attend birthday parties, participate in cooking at school or even have a Christmas or Easter treat, without me having to provide a detailed list of what he can and can’t eat and the inevitable 20 minute discussion with the adult in charge about his condition. We encourage him to have a go at whatever he wants and refuse to let his condition dictate who he is or how he lives his life; and a big thank you has to go to my parents who brought me up with that very same approach to T1D and my life.

He acts out – he kicks and hits and shouts and bites – and sadly the people who have to survive the mood swings are us and G. G has had a hard role to play as the big sister to a poorly child. She worries about his health and I know struggles when we have to disappear off to London for the day for his hospital check-ups. But, she is also a child and has her own challenges to deal with. My children are the best of friends and would defend each other to the end; but are also the worst of enemies. It has become extremely important for us to invest as much time in G as we can and the last couple of months have enabled us to do just that far more than before. She recently took part in a music event organised by the local authority music education department and her clarinet skills were considered good enough to allow her to play with the wind band. This was something just for her and she loved every moment.

She has also been invited to join the local swimming club and that is something we are keen to encourage her to do. There was a point when we wondered a couple of years ago if she’d ever learn to swim, but she is now excelling at it and her teacher invited her to join the Club to see how she gets on. It’s an additional time commitment on a weekly basis for us as she will need to attend at least 1 extra training session a week as well as competitions, but we wouldn’t have it any other way.

I’m proud of both my children – M for his stoicism in dealing with his condition and making the most of life; and G for her continued hard work at school and at her after-school clubs. She may not like the fact that M misses school regularly to attend hospital appointments, but she admits that she wouldn’t want to have the blood tests and diet that he has. Neither child has an easy cross to bear right now, but I hope Mike and I manage to get it right enough to see them successfully and happily through to adulthood.

7 years to diagnosis

Searching for an answer